Recognizing Pain in Residents With Dementia Who Can't Tell You

A resident with advanced dementia starts pushing staff away during morning care. She has been calling out at night and refuses to stand for transfers. It is easy to label this as "behaviors." Sometimes, though, the resident is in pain and has no other way to say so.

Pain is one of the most common and most easily missed problems in residents with dementia. Recognizing it is a nursing and CNA skill that comes before any treatment decision, and it is something every shift can do well.

Why Pain Gets Missed

Most pain assessment depends on the person telling you it hurts. As dementia progresses, self-report becomes less reliable, and some residents can no longer answer a question like "Do you have pain?" at all.

A 2021 review in the Journal of Pain Research by Achterberg and colleagues concluded that chronic pain is still undertreated in people with dementia, though the extent varies by country and setting. The authors point to poor use of observation tools in practice and limited staff training as part of the problem. In one U.S. study they cite, about 734,000 nursing home residents, residents with severe dementia were less likely to receive opioid pain treatment than residents without dementia.

The same review notes that people with dementia show the same kinds of facial pain expressions as others, often more intensely. That is good news for staff: careful observation works.

How Pain Shows Up

In a resident who cannot describe pain, watch for changes from their usual self. Signs that may point to pain include:

• Sounds: moaning, groaning, crying out, gasping, or saying "ouch" or "stop"
• Face: grimacing, wincing, a furrowed brow, clenched jaw or a frightened look
• Body: guarding or bracing a body part, rubbing one area, rigid posture, clenched fists
• Activity: refusing to walk or stand, resisting care, staying in bed more
• Mood and routine: new agitation, withdrawal, poor sleep, eating less

A professional newsletter summarizing surveyor guidance for F697, the federal pain management requirement, notes that residents with cognitive impairment may show pain through agitation, behaviors or changes in sleep, and that surveyors expect staff to evaluate pain "through all available means."

Use a Structured Tool

An observation tool turns a gut feeling into something the team can track and compare. One widely used option is the Pain Assessment in Advanced Dementia (PAINAD) scale, published in 2003 in the Journal of the American Medical Directors Association.

PAINAD scores five items from 0 to 2: breathing, negative vocalization, facial expression, body language and consolability. Totals range from 0 to 10. Staff observe the resident for about five minutes, and observation can happen at rest, during care such as a transfer, or after a pain intervention. The Achterberg review lists PAINAD among the best available tools, while noting that no observation tool is perfect.

The MDS also builds this in. When a resident cannot answer the Section J pain interview, staff complete a staff assessment for pain that records observed signs such as nonverbal sounds, vocal complaints, facial expressions and protective body movements, and how often they were seen.

Your facility chooses which tool to use. What matters most is that everyone uses the same one, the same way, at the same moments.

Observe During Movement, Not Just at Rest

Many residents look comfortable lying still and hurt only when they move. A resident who scores low at rest may score much higher during bathing, repositioning or a transfer. CNAs are usually the people present at those moments.

Encourage CNAs to tell the nurse right away when a resident winces, guards or pushes away during care, and to note what they were doing at the time. "She grimaced and held her right hip every time we turned her" is far more useful than "resident was combative."

Example (made-up resident): In Room 12, Mrs. B. began striking out during morning care after a fall two days earlier. A CNA noticed she guarded her left wrist. The nurse scored PAINAD during care, documented the findings and reported them to the provider, who decided on next steps.

Quick Checklist

• Agree on one tool. Confirm which pain observation tool your facility uses and train every shift on it, including agency staff.
• Score during care. Add a pain observation during transfers or bathing for residents who cannot self-report.
• Ask "Could this be pain?" Before calling a new behavior a dementia symptom, report it and let the nurse and provider consider pain as a cause.
• Re-check after any intervention. Document a repeat observation so the provider can see whether the plan is working.
• Include families. Ask relatives what the resident's usual expressions and habits look like, and note it in the care plan.

A consistent daily screen, such as the one Keystone provides, can help teams notice residents whose function, sleep or behavior is changing so that the clinical team can look sooner.

This article is general education for skilled nursing teams. Follow your facility's policies and the direction of your medical director and providers.